TYSON MATTHEW KOTTELENBERG


"The Lord is faithful to all His promises, and loving toward all He has made." Psalm 145: 13b

This blog is about our eight year old son Tyson. Tyson was born with serious complex congenital heart defects, (Hypoplastic Right Ventricle, Tricuspid Atresia, Coarctation of Aorta, Transposed Great Arteries, with VSD and ASD.)
In short, the right side of his heart is completely under-developed (he has half a heart,) his main arteries are mixed up, and his aorta is narrow. He has undergone 3 open-heart surgeries and 5 heart cath procedures to try to 'repair' his heart. Sadly, Tyson has also been diagnosed with pulmonary vein stenosis, a fatal disease in the veins of his left lung. Typically, having the 3 palliative surgeries buys children with single ventricle hearts many years before eventually needing a transplant. But because of the narrow pulmonary veins, this increase in pressure is causing his blood to shunt the opposite way across his Fontan fenestration and surgeons are not able to close the fenestration. As a result, he remains on coumadin and is heading down the transplant road faster than we'd originally anticipated. He's still doing AMAZINGLY well all things considered. We entrust our dear son into the hands of God, knowing that in all things God works for the good of those who love Him!

FLORIDA - Day Seven


It's Friday.  Our last full day in Florida :(  We started the day by meeting Woody the Woodpecker and then having some breakfast at the Gingerbread House.  
Our final theme park for the holiday was Epcot.  There were really only a few things that interested us there, so we thought if there was time left we'd go back to Magic Kingdom  since it was so busy on Monday and we missed out on a few things we'd really wanted to see.  We enjoyed Soarin' (a really cool hang-gliding ride,) Spaceship Earth, Mission Space, and Tyson really enjoyed Turtle Talk with Crush and the Finding Nemo ride.
Epcot was definitely not our favorite place and the kids were bored so we decided to take the Monorail and hit up Magic Kingdom again.  We enjoyed the Big Thunder Mountain Railroad, the Magic Carpets, Pirates of the Caribbean, It's a Small World, the Haunted Mansion.  We also received first-in-line treatment to get Winnie the Pooh and Tigger's autographs :)  Then Brian took the kids on the Tomorrowland Speedway two more times (a favorite for our family!) and we tried  to do Space Mountain but the ride broke down so we missed out on that one. 

I love Kenya's face on this picture!  With the Magic Button giving us Fast Passes to all the rides, the kids enjoyed this Speedway over and over. 
Tyson and Addisyn waiting in the stroller while Brian and the older 3 went through the Haunted House


When we had enough of Magic Kingdom, we headed back to the Village where a Pirates and Princesses Party was already in session.  I'll tell ya, this place really knows how to throw a party!  

Aaaarrrrr!!

Princess Kenya

Braden and Merrick had a great time too!
The princesses were given tiaras and flowers, and had their face done-up in make-up.  The pirates received eye patches, head scarves, and swords.  Then they all got up on the Ship of Dreams stage to show off their new outfits.  The music is loud as we all dance without a care in the world.  As if none of the children here are dying of cancer, or living with broken hearts, or breathing through tracheotomy tubes.  As if their physical ailments no longer exist, as if hospitals are not their second homes.  I look around the Ship of Dreams and see mothers watching their children with tears in their eyes.  I want to hug them and say, "I know."  I know what they're feeling.  As we watch our children have the time of their life, we shed tears of joy and tears of sadness.  Joy because our kids are just so so so happy.  And sadness because we our week is coming to a close, and we wish every week of their lives could be like this one magical week. 









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